William Shatner & Habituation

Re: awareness & habituation:

I'm glad that Mr. Shatner and many, many others have achieved habituation through TRT-based therapy. I have no doubt that patients have found satisfaction via TRT.

What I do find lacking and hope to help facilitate in the future is true curative research. We spend a lot of time here at Tinnitus Talk talking about TRT, which, according to the Cochrane(*) review, can be effective but has limited scientific evidence to back up the claims that TRT clinicians often point to:

(*)The Cochrane review, for those unfamiliar:

Since we know that a) TRT has shown benefit in a single low-quality study and nothing more as of the most recent date of Cochrane review, in a protocol that has been available for patients since the early 1990s, and b) TRT does not promise to hold any type of "key" toward a "true" cure for tinnitus, why are we not "all in" on finding a true cure?

We have a number of people on this message board who have experienced relief via the use of Retigabine, and we know that there is very recent research pointing toward the same fact pattern:

With that said:

Why should we sit here debating the efficacy of TRT any further when we have real evidence pointing toward a cure? If the research sitting in front of us now was in front of Mr. Shatner in 1996, I would have to imagine he would be as interested in using his voice to push for a real cure. In fact. @Dr. Nagler himself said as much back when he was on the Today Show in 1997:

"Write to your congressman. We need money, we need money, so that I'm out of a job. We need a cure." -Dr. Stephen Nagler, Today Show, 1997

TODAY SHOW with Dr Stephen Nagler 1997

 

We spend a lot of time here talking about a lot of things, TRT being one of them. The reason TRT, CBT, and other habituation-based approaches hold interest for me is that they offer legitimate hope for relief today while waiting for the cure of tomorrow. Once there is a cure, we can all celebrate ... and TRT can be relegated to the history books.

Back in 1997 in front of an international television audience I said: "Write to your congressman. We need money, we need money, so that I'm out of a job. We need a cure." Well that is as true today as it was eighteen years ago. And while there might possibly be reason for more hope today in that regard, we still do not have that cure. Which is why my sig line reads: "Just because you have tinnitus, that does not mean you have to suffer from tinnitus."

Right. And while I cannot speak to how other TRT clinicians run their clinics, it is my own practice to have a frank discussion about the methodological shortcomings in the published TRT studies ahead of time. (See my post #86.)

stephen nagler

 

I think we posted our posts at about the same time (me 13 minutes after yours but I was typing mine up while yours was posted--so I didn't see your post right above me until after posting!) and I appreciate that you have that discussion with your patients.

My point though is that, at least in this particular thread, the discussion has turned toward TRT, because that is what Mr. Shatner used to facilitate habituation. Were he presented with the same research today, I would think that he would be using his voice to push for a cure. And you yourself said back in 1997 that what we, as tinnitus patients, should be doing, is writing to our congressman for a cure.

It is true that you yourself are a TRT clinician, so whether in fact or in appearance, at least a portion of your interest in TRT is because your clinic provides TRT, correct? For nonprofit orgs in the United States, individuals with a conflict of interest are required to disclose that, whether it is in fact or appearance only. In this case, it seems as though to me there is at the very least a conflict of interest in appearance, even if in practice it may not be as so.

I don't say that to be aggressive or argumentative, but it has to be taken into account when members review this information, at least in my opinion.

 

Yes. And on this board I have revealed my personal biases numerous times - including in my bio:

https://www.tinnitustalk.com/threads/dr-stephen-nagler.5936/

And in my financial disclosure:

https://www.tinnitustalk.com/threads/tinnitus-retraining-therapy-trt-financial-disclosure.6281/

At one point I thought about placing the URL of my clinic in my sig line as a standard disclosure so there would be no doubt about the fact that I am a TRT clinician, but the admins felt it would not be a good idea. Should they change their minds, I would be willing to reconsider it.

Shatner has often used his voice over the years to push for a cure. But were he presented in 1996 with the current state today's research, there is no doubt in my mind that he would still do TRT. Why? Because we do not yet have that cure!

stephen nagler

 

I don't disagree with whether or not he would still do TRT. I'm simply stating that his voice would be useful in the push toward getting dollars for research for a cure (which you also stated was important back in 1997.)

Very true--and thanks for sharing those again.

 

Every celebrity's voice would be useful in the push for a cure. Shatner has actually done something about pushing for a cure, whereas relatively few other celebrities have stepped forward in that regard ... and absolutely no other celebrities have done it to the extent that Shatner has.

 

That I definitely agree with. Here's a (relatively clickbaity) article about celebrities with tinnitus:

http://www.ranker.com/list/famous-p...jOznAQ.1&utm_referrer=https://www.google.com/

I can see a number of celebs whose voices could up awareness and in turn donate dollars toward a cure. Steve Martin, Bob Dylan, Gerard Butler, Ozzy Ozbourne, Will.i.am, Alex Trebek, Paul Simon, Trent Reznor, Phil Collins, Barbara Streisand, etc., the list goes on. Imagine if they re-did the video Tinnitus Talk produced here:

https://www.facebook.com/TinnitusHub/videos/vb.1417027868578193/1543504279263884/?type=2&theater

I doubt Charles Darwin would be of much help to us today...

 

So I guess I'm not seeing your point. Are you suggesting that if Shatner had not done TRT then we would all be better off because he'd be pushing even harder for a cure? That perhaps TRT is the real villain here? And the fact that TRT has helped provide meaningful relief to thousands and thousands of tinnitus sufferers over the years is somehow irrelevant? Well it's not irrelevant to them!

You said earlier that you were not being argumentative, and neither am I. I am just trying to understand what you meant when you posted: "If the research sitting in front of us now was in front of Mr. Shatner in 1996, I would have to imagine he would be as interested in using his voice to push for a real cure" ... because he's already doing that!

 

Heck, Louis Tomlinson of One Direction has tinnitus, AND 19.3 MILLION followers on Twitter:



I imagine a tweet or two from Mr. One Direction would result in more than a few positive page-clicks. And I also circled that the British Tinnitus Association is following him on Twitter. How we pull celebs in like him to help with the cause, we'll have to see. But I am positive Mr. One Direction probably has a bigger sway on his followers than Mr. Shatner (no disrespect to Mr. Shatner, but more a demonstration of the power of social media (and One Direction ))

 

...is the point that I am agreeing with (the bolded & italicized point.)

No, I am not stating that whatsoever. In my original post:

I'm appreciative of the work Mr. Shatner has done with the ATA in the past and I truly hope that he & others can step forward and make a bigger push in the future.

Which gets me back to the original point I made:

"We" in the quote above refers to the Tinnitus Talk community. We as a community at Tinnitus Talk have the ability to band together to start to make this happen. We can't do it alone but I have to believe that the 7000+ members at Tinnitus Talk + the combined knowledge of organizations like BTA or ATA can make it happen.

 

Then perhaps try to make it happen with Mr. One Direction, but please do not take Shatner to task for doing the right thing himself (which is what I thought you were doing, but apparently I am wrong in that regard!) And what this all has to do with habituation and TRT is totally beyond me.

 

Habituation is the topic of the thread, and TRT is what has been discussed amongst members as the method Mr. Shatner used to achieve habituation.

Again, I don't think my point below is confusing or off-topic in the least:

With that said, @Dr. Nagler do you still find it true that we need money for a cure? Surely American Tinnitus Association alone cannot do the job--per their most recent publicly available Form 990, they spent $69,659.00 on research grants:



Mr. Shatner has spent time as a spokesperson for the ATA searching for a cure. Clearly $69,659.0o annually is not enough to find a cure in this lifetime. Heck, it's less than my annual salary. This is not the fault of ATA or any particular person, but it does scream to me that there is a huge need for action, and that Tinnitus Talk has the ability to be part of that action.

With that said, do you still agree that we need money for a cure? If so, my point above seems to be very clear: "Why should we sit here debating the efficacy of TRT any further when we have real evidence pointing toward a cure?"

 

Yes, of course.

Because at best that cure is years away. And because people who are really really hurting TODAY like Shatner and I were hurting in the mid-1990s deserve to know about protocols that will provide meaningful relief today while waiting for that cure of tomorrow. Well, the efficacy of those protocols appears to be questionable in the minds of some. Which is why debating that efficacy is worthwhile. Moreover, there's a lot of bad information out there about those protocols. Which is why providing clarity and answering questions is worthwhile.

 

@marqualler, let me ask you a question, if I may.

Just a little background first. Back in the late 1990s Dr. Jack Vernon, who at the time was the Director of the Oregon Hearing Research Center, offered the opinion that there would be a true cure for tinnitus within five years. Now even though Dr. Vernon was a champion of tinnitus masking, he was the director of one of the most cutting-edge auditory research centers in the world where much of the work was focused not on masking but rather on finding a cure for tinnitus. So five years have passed since he offered that opinion. And ten years. And fifteen years. A number of potential cures have come and gone in that time, each accompanied by unbridled enthusiasm ... until it fizzled. Well, now we have retigabine and the potassium channel openers - and we have the usual unbridled enthusiasm. Do I hope this particular avenue of research pans out? Of course I do. Just like you do.

My question: Assume that available tinnitus research dollars magically quadruple overnight. As a member of Team Trobalt, Team Research, and Team awareness, what do you honestly think that likelihood is that we will have a true cure for tinnitus within the next decade? I mean, do you realize that in all this time the research community has yet to agree on what the word "cure" means when it comes to tinnitus??!! Not only that, they cannot even agree on a definition for the word "tinnitus." So they are trying to come up with something they have yet to define to treat a condition they have yet to define. Of course we all "know" what tinnitus is - but as far as coming up with a unified definition in scientific terms, one could argue that we are still back in the stone age.

So again. Research dollars have quadrupled overnight. Hell, for arguments' sake, let's say that they have grown by an order of magnitude of twenty! That does not change the reality that people are truly suffering today. There are a whole bunch of 9s and 10s out there today (see my "scale" in Post #86.) What in your opinion is the likelihood that we will have a cure for those 9s and 10s within the next decade? And if your answer is "I honestly have no idea - but now that I think about it in those terms, probably not so great" then perhaps you will understand why I think that a discussion of the efficacy of habituation-based protocols might be a worthwhile undertaking.

stephen nagler

 

Thank you Dr. Nagler for the patience to address the accusations or attacks directed against you. I think I have read Dr. Nagler's postings for many years. I think he said many times that there are many roads to Rome when it comes to getting relief or habituation to tinnitus. I don't think he is trying to promote his own personal service to any support forums he was in. Most of the time, he was referring, when asked from people in a certain area, TRT practitioners who he knows are credible.

His didn't say TRT is the only way (perhaps it was way back then when he was struggling). He does acknowledge treatment such as CBT being able to help. In fact at the end of his famous 'Letter to a Tinnitus Sufferer', he was asking readers to challenge their negative thoughts with more realistic ones. That is CBT in essence in a personal self-help mode.

That he would charge a fee for time involving a medical consultation which lasts for hours is just what every medical professional does. This applies to other doctors that if you need their personal time for you alone in a professional service, you pay up. I am just glad that Dr. Nagler is willing to offer quite a bit of free consultations to struggling members here, and he has done this for years. Thank you Dr. Nagler for being there when I was at the worst time a few years back.

 

Ya know what...If i was rich id easily donate like 50 million to the ata and i can say that with certainty because im known for spending huge amounts of money on others.

 

I think it is realistic that if one of the drug treatments currently in clinical testing (ex. AM-101, AUT-63) is proven to be efficacious to certain subtypes of tinnitus as discussed here we could be on the verge of a true pharmaceutical treatment. I don't think it's possible to put any kind of timetable on the table as you are asking because of the variability of research timelines. I do know that if one of the "big" pharma projects going on were to be found efficacious for certain subtypes of tinnitus, the resulting drug would be more than we have available right now. It might not bring the 9s and 10s down to 0s, but it might bring them down to 3s or 4s.

Or say that Prof. Moore's research as quoted in the most recent Team Trobalt update strikes "gold" (or finds some form of success):

Suppose that Prof. Moore were able to prove with his research that an outcome from his lab could bring a larger majority of people down from 9s and 10s to 3s and 4s. That to me would be considered a major win.

When I said: "Why should we sit here debating the efficacy of TRT any further when we have real evidence pointing toward a cure?" I mean it in the context that there is very little that can be "added" to the conversation other than "this is a potentially effective treatment toward habituation." There is more to the story that has yet to be written with various pharmaceutical treatments that are in development. Do those people in the 9s and 10s deserve some type of treatment to help them cope with their symptoms? Of course they do, and TRT may be beneficial for them. But for those of us who have found themselves beyond the need of habituation facilitation (myself included) and would just really love some kind of pharmaceutical treatment that might work for my subtype of tinnitus, I for one want to spend my time at TT increasing awareness of the condition and raising dollars to find treatments.

I too appreciate your assistance you have provided to me and to others on the board, @Dr. Nagler. I recall telling you that your quote about "Just because you have tinnitus, that does not mean you have to suffer from tinnitus" helped me at my most fragile emotional and mental state, and your "Letter from a Tinnitus Sufferer" provided me with the context and framework that I used in my sessions with my own CBT therapist. Yours, and others advice, like from @billie48 and from @Karen, and from @Markku, and from @Steve, all brought me to a point today where I truly feel better. Like I told my wife last night, I feel fortunate to be able to honestly say that I truly feel happier today than I did a year ago today, at a time when I didn't have tinnitus. Yet I still feel very personally motivated to do what I can in my power to find a cure, or at least pharmaceutical treatment, both for myself and for the good people I have met on this forum.

And that's the beauty of Tinnitus Talk--we have members like yourself who are willing to provide support to members suffering acutely or chronically. I just feel that, as a community, we should be doing what we can to support the future, and to me, that means steering fewer conversations toward habituation-based processes (for which we already have many existing resources available) and more toward pharmaceutical treatments.

 

I agree with you regarding the drugs in clinical testing, and I realize that putting a timetable on it was unfair of me.

The problem is the seventh word of your response quoted above. It is only two letters, but it is a HUGE word. And because of that two-letter word I refuse to turn my back on the 9s and 10s of today, not when TRT gets so many of them down to 2s and 3s. These people are suffering big time today. They deserve our respect today. They deserve our attention today. And as a clinician who deals with 9s and 10s routinely, when people question the efficacy of TRT and other habituation-based therapies, I am going to address those concerns head-on. That is not to say I don't support research for a cure. I absolutely do. But while my hope is for tomorrow's cure, my reality is today's suffering.

My friend, I am told that there have been some very ugly posts in this thread. So earlier today I unclicked my "Ignore" button and checked. And I was absolutely nauseated by what I saw. It's totally out of control. One person who had the unmitigated gall to change his mind amidst all the confusion was told:

"Well, that's a change of mind, if ever I saw one. Are you sure you didn't forget to take your medication? Or perhaps the medication is the problem? Either way, I must admit, I do not feel particularly sorry for you, but I do empathize which those around you. That's for sure."​

This is a Support Forum, for goodness' sakes. People get confused. They change their minds. What kind of support is it to tell a tinnitus sufferer "I do not feel particularly sorry for you" no matter how many times that person changes his or her mind!

stephen nagler

 

I completely agree that the 9s and 10s deserve respect and attention and am not asking you to turn your head on those folks. I'm simply stating what I said above:

 

Seems to me that the Support Forum is exactly where habituation should be addressed. We have three forums here on Tinnitus Talk dealing with tinnitus research and tinnitus treatment. But habituation does not treat tinnitus at all. When a 9 or a 10 becomes a 2 or a 3 thanks to a habituation-based protocol, that person's tinnitus is no better. The person is TONS better, but his or her tinnitus has not been treated in the least. If you want to steer the discussion "more toward pharmaceutical treatments," I would not dissuade you from doing so on this Support Forum in spite of the fact that there would be a far better fit elsewhere. So please do not try to dissuade me from discussing habituation on the Support Forum, which is precisely where it belongs.

 

Hi, I have followed this thread with great interest. I agree that it is appalling to read some of the comments as this is a support forum. People should feel free to speak their minds without someone questioning them, their logic reasoning (most people are not rational, and their feelings never are) and most of all their rights to be treated as a human being.

With that said I will go to what I have to say about TRT. I have never done TRT. I live in Sweden and in my 9 years of suffering from tinnitus I have met two ENTs both of wich had only five words for me. And those words are "learn to live with it". There is very little help to get around here and the health care system is a mess. There are long waiting times for everything. Today I called to get an appointment with a GP and they gave me an appointment....IN JUNE!!
When I was 18 I injured my knee and it took more then a year to get an MRI. So it's a huge shame!

I have been suicidal. I have shed tears. I have thought that my life is over. Most of all I feel so stupid for allowing my self to get this thing, for not protecting my hearing in time. But most people are not aware of what they are doing to their hearing on a daily basis. I was one of them.

My father has tinnitus. But he has worked in the industry for many years operating heavy and NOISY machinery so I never saw it as being in the danger zone by playing Call of Duty on a relatively high volume with headphones or going to the occasional concert or night club. I did know about tinnitus, I knew that it was a good idea to protect your ears but I always saw my fathers big yellow earplugs that were sticking out of his ears from the couple of times I visited him at work and I thought "I can't wear that to a night club. I'd be ridiculed!". The funny part is I'm doing it now and those things light up real nice under UV-lights

Well, back to the issue.

I am not against TRT but my gut feeling tells me that for us to beat this thing we have to be vocal. 2s and 3s are generally happy with their lives and don't think about writing to a congressman.

Even as this sounds really, really bad. And I am so sory for even thinking about it. But I think that we need more people to suffer and most of all COMPLAINING LOUDLY. I think the whole problem is that when people do treatments such as TRT, they settle. They settle for something that isn't a cure when a cure should be the only thing we focus on. And then most of them just carry on with their life and as far as politicians and governments go, they're cured. They're out of the system being productive, law abiding, tax paying citizens.

I know that my thaugths are not politically correct and probably bad but this is how I feel right now at this moment. I might think differently in a while but right now I'm hurting and I want that damn cure. I don't want to live with this thing!

 

It is the attitude with which you present your posts that may put people off engaging in conversation or reflection around them or the information therein. It can create a hostile and/or combative environment, rather than an open space for questions and conversation. This can overshadow the valuable work you do and data you present.

When you're communicating, how you do it, not just what you say, does make a difference.

 

It is indeed. Thankfully the admins have cleaned it up. But I suspect they have far better things to do with their time than to act as nursemaids for a few noisy children masquerading as adults. I am sorry, but the idea that the only way I can escape the personal insults hurled at me on a support board is to use my "Ignore" button so that I do not see them, well that really irritates me. Why can't folks who don't want to hear what I have to say just use their "Ignore" buttons. I have four people on "Ignore" as we speak. It works wonders. Look, I know that my writing style can use some work. Believe me, I know. But I am 66 years old, and it's not likely that I'm going into turn into a William Shakespeare or a James Joyce anytime soon. So the board platform has done those who for whatever reason do not wish to read my posts a great service. There is an "Ignore" button. Click it ... and I am gone.

Actually I respectfully disagree. People should be questioned about their ideas. That's how everybody learns. And it's now progress is made. But that questioning should be done civilly and respectfully.

I agree.

Whoa. There I draw the line. You live in Sweden, where to the best of my knowledge there is no TRT. And it sounds like you are hurting. A lot. I genuinely feel bad for you. But are you telling me that if Dr. Jastreboff (the fellow who treated Shatner and me) opened a TRT clinic down the street from your house ... that you would refuse to go because you feel you need to continue suffering? I don't think so.

stephen nagler

 

You're right about that and I agree.

I've heard of CBT and of TRT only there are very few that are working with tinnitus and to my knowledge there are no clinics. Everything is done either in hospitals run by the government or if you have the money there are private options.

I'm not saying that these people are doing anything wrong. Hell, if you look at this board most of the people (at least the ones that are active) have had tinnitus for less then 2-3 years. Where are all the millions of people that have had this thing for many, many years!? My guess is, they moved on. And that is the core of the problem. People with Parkinson's disease don't just "move on with ther lives" and even though there are less people suffering from Parkinson's there is a hell of a lot more money raised annually for finding a cure for that then for tinnitus. Logic?

But the thing is when you see someone with Parkinson's you can accually SEE that there is something wrong with them. With us...you can't tell. We suffer in silence. Ironic isn't it since that is the very thing that has been taken from from us?

 

I understand completely. So here again is my question: If Dr. Jastreboff opened a TRT clinic down the street from your house ... and if you could afford it, would you do TRT or would you refuse to do TRT because you feel you need to continue suffering?

Of course you'd do TRT. So maybe while continuing to push for the cure, we should also push for more affordable, more widely available, and more standardized TRT??!!

 

I'm not sure. I would have to think about it but I must say I have little interest in anything but a cure. So first of all I think that TRT might have not worked for me for that reason. But I would probably give it a shoot but not becouse I believe in it but just becouse there litterly is nothing else. And the irony is that it might be one of the reasons that there are no alternatives.

We just put a patch on it people are happy about that. I just don't get it...

 

You're not sure? Really? If there were a safe, effective, and affordable approach to markedly decreasing your considerable suffering offered in a clinic down the street from you, you're not sure you would do it? You would instead hold out for a cure? Really? Why not do TRT, feel better, and then go for the cure whenever it gets here. Because that's why people do TRT in the first place. They want to decrease their own suffering while waiting for the cure.

Look, I'm pretty much the "poster boy" for TRT. I was truly suffering, and now thanks to TRT I feel great. But if research came up with a true cure that had an acceptable safety profile, I'd surely take it. Who wants to hear their tinnitus even 5% of the time if they don't have to? Certainly not me.

 

I get what you're saying and I do agree with you, for the most part. But at the same time I can't help feeling that in the long run, therapies such as TRT, CBT and so on, might do more harm then good. Not for the individuals that go through with them but for all of mankind. Becouse the longer it takes to find that cure the more people will suffer. And people that do TRT don't stop suffering, not completelly. I just don't buy it that they turn into happy campers, bussiness as usual.

And that collective amount of suffering might in the end turn out to be greater then if there were no therapies and people long ago started flooding the health care systems, writing angry mails to their congressmen, not being able to work and collectiong disabillity checks and what not. Then we might have got the funding and maybe we could have had a cure already. But we'll never know. It is as it is.

And I'm not saying we should stop TRT. I'm just saying that I think we need to be more vocal. Maybe you can ad that to your protocol. Encourage people to be more vocal for a cure even after TRT

 

For US-based patients, TRT would be a lot more affordable if it were covered by insurance. From two sources, insurance has not covered TRT because it has been deemed to be experimental at this time:

So in order to make TRT affordable, at the very least, TRT needs more clinical trials with randomized controlled studies and long-term follow-up evaluation. Which takes me back to my original point about Cochrane Review's assessment of TRT.

Here's one clinical trial on TRT that is expected to be be completed by June 2018 that may be able to address those points:

https://clinicaltrials.gov/ct2/show/NCT01177137?term=tinnitus+retraining+therapy&rank=2

That said, to make TRT more affordable, we need better studies. To make TRT more widely available and more standardized ... well, I imagine TRT would become more widely available if there were better studies showing its efficacy. And more standardized, well that seems like something that would be in the jurisdiction of the authorities on TRT: http://www.tinnitus-pjj.com/

 

An interesting way to look at it.

Here's an alternative view: Everything in life is a compromise. We live in a world of grays, not a world of black & white. If TRT does more harm than good for mankind (which I seriously doubt) then do TRT, get better, and devote the rest of your life to making a difference in the world. That's what I did, anyway.